Living life as a replacement pancreas for myself and my youngest!

Menu

Tag Archives: insulin

It is crazy to think that over 6 months have gone by since Nora’s T1D diagnosis – some days it feels like we have been her pancreas for years while other days we feel like we are just taking the first steps of this lifelong journey. Here are a few things we have learned along the way and feel compelled to share with the world:

Managing T1D for a child that cannot talk is like trying to hit a moving target while blindfolded. Some days we got it (YES!) and other days we are WAY off.

If she is having a temper tantrum we check her blood sugars. Big swings in blood sugars can lead to BIG feelings.

Just because her blood sugars are low doesn’t mean she is going to sit still or stop playing – find a phone or iPad STAT.

You can NEVER overpack snacks – they will always get eaten. Anyone with young kids can understand this one, now multiply it by 10.

Technology is a blessing, until it’s not. It helps you sleep better some nights and keeps you up other nights. It gives you comfort, but you’ll be on your phone more often then not checking her numbers and texting her care givers.

This post was recently shared on MyID’s T1D blog, but it is important to me to make sure it has a home on my blog as well. This is my journey…

Everyone has moments in life that rock them to the core, ones that change their thinking or put them on a whole new path. For some, those moments are joyous things like marriage or the birth of a child. For others, those moments might be shrouded in challenge like the loss of something or someone important. I think those challenging moments are essential to living because you never know what you are capable of without them. Like many people, I have had numerous positive and challenging moments that have stopped me in my tracks, but my daughters Type 1 Diabete diagnosis brought me to my knees.

I have been actively managing my own T1D since my diagnosis over 26 years ago. The management of my T1D has just been a daily thing to do like getting dressed or making my bed. I didn’t go out of my way to share the literal ups and downs of living with T1D. My mentality was “it just is what it is” but I also thought the act of sharing would result in people sympathizing or pitying me for something that was my reality. I didn’t want people to feel bad for me, I wanted them to see past my T1D and see me. Of course, if someone asked me about giving myself an insulin shot or taking my blood sugar levels, I would talk with them about what I was doing and why but for the most part I keep my invisible disease invisible.

This all changed when my daughter was diagnosed with T1D in December of 2018 at the age of 18 months. Suddenly, I realized that I couldn’t continue to be quiet about life with T1D. I realized that sharing is a critical part of the journey with this autoimmune disease – the more I share, the more people know, and the more they know, the more they understand what’s its like to live with T1D. Without this basic understanding, there is nothing – no support, no love, no fight for a cure.

When I tell people about Nora’s diagnosis, generally the first response is “she’s so lucky to have you”. I give a smile and a nod but think to myself “I’m lucky to have her”. Her moment has changed me – the way I think about this disease, the way I interact with it, the way I talk about it. Now, I’m shouting from the rooftops that we have T1D and that we will continue to rise up and do our part to educate and fight for a cure.

Let me start this post by saying that I am grateful we have access to reasonably decent health insurance. Without it, life as a person both living with T1D and parenting a child with T1D, would be monumentally different. However, my gratitude only goes so far, especially when health insurance companies dictate what T1D supplies or tools are and are not covered.

When Nora was first diagnosed and in the hospital, she took Humalog (short acting) insulin and Levemir (long acting) insulin. These were great options for her because she needed to be able to take her insulin in half units and these brands provided that option with minimal issues. When we were discharged from the hospital, we left with 15 or so prescriptions and it was overwhelming to get them filled, even for this mama who has had T1D for over 25 years. When I went to pick up her prescriptions, the pharmacist told me that my insurance wouldn’t cover Humalog and Levemir. What the…?! Why not? Because they are not my insurance company’s preferred brand of insulin. I contacted Nora’s Endo and they worked through the insurance and prescription process to get Nora all set with her insulin. The insulin that she uses now is just as effective as the insulin she used in the hospital, but because of the brand switch we have had to make accommodations to ensure she can still inject in half units.

On February 1st, UnitedHealthcare, one of the nations leading insurers, put in place a policy that says they will no longer cover all brands of insulin pumps for persons with T1D ages 7 and up. Instead, UnitedHealthcare has selected a preferred insulin pump brand. Patients are able to obtain non-preferred insulin pumps but have to go through additional approval steps, which are generally not successful. Imagine getting your groceries from a near by grocery store for years and then all of the sudden having to shop at a grocery store thirty minutes away because your original store no longer accepts your payment. That is what this new policy is doing to families who live with T1D, except we are not talking about groceries, we are talking about human lives and the quality in which they are lived.

This new policy doesn’t impact Nora or me directly, but we have had more than one experience dealing with an insurance company’s preferred brand and we most certainly will have similar experiences in the not so distant future. The fact that an insurance company can dictate what supplies and tools a person with T1D can use to manage their disease is infuriating and unethical.

If you would like to join me in voicing opposition to UnitedHealthcare’s new policy, please Take Action. A business has no business in deciding what is best for a persons management of T1D. T1D is not, and never will be, a one size fits all disease.